Thursday, 1 September 2011

Personality Failure

I’d like to say that this week I have been uplifted and experienced a huge change in mood, however, it seems more likely I am having a personality failure. I know the pressure of quitting smoking isn’t helping (by the way very proud of myself as I am on day 11 now without a cigarette!) but I can’t seem to snap myself out of this personality coma. I have felt doom and gloom for no real reason. It made me think of everyone out there who is suffering, do we all have several personality failures when we experience flare ups? It’s no surprise that being in pain affects your mood.

I hate it when pain strikes and I don’t just mean a headache. I mean full on, chronic aching of joints and muscles to the point where you just want to cry. The problem is when you’re in this pain ‘bubble’ as I call it, it’s hard to carry on as normal. Those who are closest to you bear the brunt and know that something isn’t right, I believe I have treated my closest family members quite badly this week because of my constant mood and inability to smile on cue. I hate being this way and I kick myself when my mum or sister leaves after I’ve spent an hour moaning or snapping at them over coffee. I just can’t seem to want to engage in conversation or feel happy about anything. All I can concentrate on is the aches and pains. I can cope with it better sometimes, but this week it’s like hitting a brick wall.

I feel stressed. I feel incredibly worn out, and I don’t know why because it’s not like I have had much to do besides work these past few weeks. The six week recovery period following my hip replacement is up tomorrow. I can’t decide whether it’s gone incredibly slow or incredibly fast? I feel almost guilty that the time is up because I haven’t been as productive as id liked or really taken the time to recover properly. I know that’s contradictory because you’re not supposed to be productive when resting. I feel like I have to push myself back into reality now and really focus on work this month (which I am happy to do) although I am a little afraid of actually going back to work. Stupid huh seem as though I work for myself? Plus, I have been working from home anyway since the op so it’s not going to be much different. I think it is the actual going somewhere and being away from home that I am afraid of. Here I am comfortable and safe and I can slip off for a lie down when needed. I can’t do that when I am not at home.

I think anyone who has RA deals with these battles of confinement and going back to reality on frequent occasions. You spend a few weeks cooped up in your home when experiencing a flare up and then have to prepare yourself to face normality again. By the time you get used to routine again, no doubt another flare up comes along. It’s a vicious cycle. I now want to concentrate on getting the balance right... which is going to be harder than it sounds. It’s funny, every time I think I have overcome challenges of living with RA it turns out not much has changed and I am still struggling anyway. My anger and fear gets in the way of living a normal life in conjunction with the pain and fatigue. Tough combination. But if I can replace the fear of going back out into the world again and deal with my anger of being shut away for so long, maybe the pain and fatigue won’t be so bad anyway?

All I can offer is (((HUGS))). Heck, of course you feel stressed and down. I mean you just went through major surgery, you are stopping smoking (congrats on the 11 days...WOOOHOO for you). I smoked for years and remember that quiting was tough and yes there was mood swings for me also. And maybe when you did get somewhat back to your old self you can let your family know how much you appreciated them sticking it out with you. Wishing you some pain free hours ahead!

Oh, RG. You've hit the nail on the head with this post, and in several ways. If it helps at all, let me say this:

YES, I (and I'm sure our fellow RA sufferers all over the world) have some really hard days when we're grumpy and snappish even though we aren't usually that way at all, and certainly don't want or like to be. Living with the pain and disability of RA is very, very hard. It takes a huge amount of courage and strength to deal with that, let alone remember to smile on cue, as you said. Please know that I "get it."

You need, however, to just forgive yourself for not being perfect. Dang, that's hard enough under normal circs, let alone when you have RA. Being angry and fearful is normal, too. And YOU--you've just had an entire HIP replaced. Of COURSE you're a bit frightened of being away from your nest, even as you long to leave it!

I think you're incredibly tough and incredibly graceful, given the load you have to bear each day. We all go through the process of re-learning and re-adapting to each new nuance of this rotten disease. If there's one thing you can rely on when it comes to RA, it's that it will be unreliable.

I wish you the best as you venture out into the world again. And I think you're right: once you're out there, it won't be as scary as you thought it would be. After all, you've been through "scary" lots of times, and survived each time. You've experienced pain and fatigue so many times in the past, it's all old hat.

You're going to continue being a real inspiration to those of us who share RA with you--and with those who don't but appreciate how truly courageous you are. You're going to be just fine.

All About Me

At the age of 22 I was diagnosed with Rheumatoid Arthritis. I did not know much about the disease but it seemed my life would never be the same again. After months of despair, loosing a loved one and giving up my dream job I am finally coming to terms with my condition. I realised that I am not alone and with the help of incredibly supportive family and friends I can live a normal life and will not be beaten by this. I hope in reading my stories you too those who have been diagnosed will realise you are not alone and those who know someone will get an idea of how their friend/relative may be feeling and the challenges we face. Now 24, I am ready to share my story with you beautiful people (be ready for one hell of a rollercoaster ride!)